cochlear implant

Imagine the sounds of the Christmas season: the ripping of wrapping paper, the squeal of an excited child, jingle bells, the whispers to Santa, and your favorite Christmas carol.

Now imagine the holidays without those sounds. That’s how it was for Riley until she turned 2. With the help of cochlear implants and years of auditory-verbal therapy, she is able to enjoy all the sounds of the season just like any kid with typical hearing, including me yelling, “Riley! Stop shaking your presents!”

One of Riley’s favorite Christmas sounds is a DVD by The Wiggles. The kiddie band was one of the first things she heard after her implants were activated. “Mama, I don’t care how old I get, ” she says, “I’ll always love The Wiggles.” The photo at right shows her gettin’ wiggly during her first holiday to hear. Pretty special, right?

Since then she has sung in numerous school Christmas programs and played three roles in her third-grade-class production of “A Christmas Carol.” Not bad for a girl who, when she was born, couldn’t hear a jet engine if you held her next to it.

When all the noise starts getting to you, stop and think what it’d be like if you couldn’t hear at all. No kids singing “Away in a Manger,” no friends laughing, no voice saying “I love you.” Then be grateful for the sounds. And take some ibuprofen and a nap and get on with your holiday-ing.

So I got this email the other day from Jennifer with the Hear the World initiative about a photography contest, sponsored by Phonak, called “Show Us Your Hearing.” The project wants to see you in a “conscious pose of hearing” (hand cupped behind your ear) and aims to raise awareness of hearing loss, which affects 16 percent of the world.

Each year in the United States alone, 12,000 babies are born with hearing loss, and the American Academy of Otolaryngology-Head and Neck Surgery reports that 1.3 million children under age 3 have a hearing impairment.

Clearly, hearing loss affects every aspect of a child’s life, from academics to developmental to social issues. Most of you know our story: Our daughter, Riley, was diagnosed with profound deafness when she was around 18 months old. We were devastated, but with education and information we made the right decision for our family. Just before she turned 2, she had cochlear implant surgery and now at age 8, she is a bilateral CI user headed to the third grade, an all-star softball player and an incredible dancer.

Some big names in music are part of this initiative including Annie Lennox, Rod Stewart, Common, Billy Idol, Harry Belafonte, Joss Stone, Lenny Kravitz. Singer-songwriter and photographer Bryan Adams captured each ambassador in the “hearing pose,” which “demonstrates the importance of being aware of your hearing at every age.”

Now the initiative wants you to submit your own photo! Details are below.

Show Us Your Hearing
Photography Competition

WHEN IS THE CONTEST DEADLINE? Monday, July 12thHOW DO I ENTER? To enter, follow these 5 easy steps:

1. Register: You will receive an email registration confirmation from Hear the World. If you don’t receive an email, please check your Junk Mail folder.

2. Visit: Click the “enter the contest” button, and enter the entry form.

3. Upload a photograph of you, a friend, or family member in the “Conscious Pose of Hearing.” The photo must be high res (300dpi), between 1MB – 3MB.

4. Give your photograph a title and provide a description of up to 100 words describing the importance of being aware of your hearing at every age.

5. Click “Send.” Your Entry will not be officially entered into the Competition unless you click the final Send button and receive a confirmation screen that states that your Entry was accepted.

WHY SHOULD I ENTER?

To take a moment to think about your sense of hearing and the sounds you are grateful to hear every day.

To support the Hear the World initiative, which is dedicated to raising awareness about the importance of hearing, while also educating the public about the consequences of hearing loss and the available solutions.

For a chance to win a Polaroid 300 Instant Camera and for a chance to see your photograph published in the award-winning Hear the World magazine.

WHAT ARE THE JUDGES LOOKING FOR?

Most visually appealing–50%

Originality–30%

100 word description–10%

Self-explanatory–10%

HOW AND WHEN WILL THE GRAND PRIZE WINNER BE DETERMINED?
1. The public will vote on their favorite photo between July 13 – August 3.
2. The top five entries that receive the most votes will be judged by a panel of judges between August 4 – August 10.
3. The grand prize winner will be announced on August 16 on the Hear the World website. Winners will be notified by phone and email.

Disclosure: Riley wore Phonak hearing aids before she received her cochlear implants, but that was in 2003, way before this contest was even a twinkle in the marketing department’s eyes. Heck, before I replied to the email, they didn’t even know I had a child with hearing loss.

Riley waits for her snack after the softball game. See her blue and pink CIs?

Joey McIntyre of New Kids on the Block and Dancing with the Stars fame shares his family’s story of hearing loss in the latest issue of People magazine. His youngest son, 3-month-old Rhys, has been diagnosed with a severe loss and is wearing hearing aids. According to the article, the family is working with an auditory-verbal therapist and might consider cochlear implants.

Many of the comments on the article are insulting, rude, and just plain ignorant. While I have no problem with a family wanting to immerse their hearing-impaired child in Deaf culture, I do have a problem with those same people spreading lies and accusing other families of abuse because they made a different choice.

I’m going to address 20 things posted in the article’s comments and clear up a few misconceptions about cochlear implants. Feel free to ask questions in the comments section or share this post with others.

1. Cochlear implants DO NOT require additional surgeries as a child grows. The only reason additional surgery would be needed is if the device failed. CIs have a 1% failure rate.

2. Cochlear implants ARE NOT implanted into the brain. It IS NOT brain surgery.

3. If parents want their child to use spoken language, they CANNOT WAIT until the child is old enough to “make the decision for himself.” Most language learning occurs before the age of 3, so waiting would put the child at a terrible disadvantage.

4. Sign language is great, if a family wants to learn it. My family, for instance, is HUGE. I didn’t expect all 100 of them to learn ASL. Even if they wanted to, it would be nearly impossible, and Riley would’ve had no way to communicate with cousins, great aunts, and I didn’t want that.

5. My daughter knows a few signs, for those times when she doesn’t wear her CI processors, but she doesn’t “rely on” ASL and doesn’t need to.

6. Speech is available at birth. How do you think typically hearing children learn language? It seems that Rhys is benefiting from his hearing aids, so using spoken language is appropriate.

7. The implant is NOT DRILLED into the skull, like a screw is drilled into a piece of wood. A pocket for the implant is carved into the skull and a small hole is drilled into the mastoid bone so that the electrode array can be inserted into the cochlea. Read more on cochlear implant surgery at Tampa Bay Hearing and Balance Center.

8. Cochlear implants don’t “fix” hearing and don’t claim to. They offer users access to sound. Just like you have to learn to speak, you also have to learn to hear.

9. AG Bell is a proponent of listening and spoken language, but that doesn’t mean the organization is against sign language. It’s not either/or.

10. Auditory-Verbal Therapy focuses on teaching a child to use her hearing and learn to speak. It DOES NOT “forbid” all gestures; in fact, a hand cue is used during therapy. It signals the child to listen.

11. If deafness is not a disability, why do so many Deaf people use hearing aids? What are you trying to “fix”?

12. Riley’s CIs don’t hurt when she puts them on.

13. Riley is a special-needs child. Any child who has an IEP or who has special accommodations at school is a special-needs child. It is not a bad thing.

14. Riley’s CIs help her hear, but she is and will always be deaf.

15 A deaf child DOES NOT belong to the Deaf culture. She belongs to her parents.

Riley waits for her snack after the softball game. See her blue and pink CIs?

I’ve previously talked about taking Riley to her mapping appointment at the HEAR Center. You’re probably wondering what that means. Mapping means programming. It’s a little like upgrading the software on your computer. Sometimes your computer slows down or needs a boost to do some new processes.

Same thing with the CI processors, which are the pink and blue devices you see Riley wearing. They contain tiny computers that need occasional updates.

The cochlear implant processors have to be readjusted at various intervals depending on how long a child has worn them. For example, when Riley first got her CIs, she had to get them mapped every month for the first couple of months. Then every three months for a couple of years. After nearly seven years, unless she’s having trouble with the CI, Riley’s map is updated every six months.

The audiologist hooks the processors to her computer and updates the software on them. This mapping sets the devices’ electrode stimulation levels in Riley’s cochlea so she can detect soft and loud sounds comfortably.

Over time, Riley will adapt to the settings. What was once too loud might become too soft as her brain’s auditory center gets used to the sounds. Then we’ll go back for another mapping session.

Nothing is sweeter than hearing my bilateral CI daughter singing The Chipmunk Song and Jingle Bell Rock. Especially considering there was a time when we weren’t sure she’d even talk.

Yeah, she misses and messes up a few words, but when I was 7, I didn’t get “snowing and blowing up bushels of fun” either. She also loves to belt out We Wish You a Merry Christmas and Jingle Bells. We’re still working on Silent Night and Away in a Manger.

And, thanks to A Charlie Brown Christmas, she knows Hark! The Herald Angel Sings. And she sings it exactly as kids do in the cartoon: face upturned toward the heavens and mouth wide open!

This was her first Christmas to hear! She was 2 and loved everything, except Santa.

The audiologist’s words knocked the wind out of us. We were devastated and in shock. Even though we had concerns, we weren’t ready for the diagnosis. Our perfect little girl was deaf – severe to profound hearing loss.

Our hearts were crushed. It was like the child we thought was ours didn’t exist.

Grief hit us hard. All the songs we had sung, all the “I love yous” we had whispered – she had heard none of them. That was the hardest thing to take. Did she even know we loved her?

Then came the guilt. How could we not know that our child was deaf? We knew people wondered that about us, and some even said it out loud. We just didn’t know. How could this have happened? No one in our family was deaf. Was it something I had done while I was pregnant? Had we done something wrong after she was born? Why had we waited so long?

The anger was next. Why had the nurses dismissed the second failed hearing test so easily? Why hadn’t her pediatrician noticed anything? C’mon! A little help here, please?

Finally acceptance came. We channeled our guilt and anger into providing Riley whatever she needed to hear and communicate. We set up appointments with a geneticist, an Auditory-Verbal speech therapist, an Early Intervention specialist, our insurance representative and an ENT surgeon. The time for tears was over. We looked ahead to Riley’s future with our chins up and shoulders squared.

Cochlear miracle
Two weeks after her diagnosis, Riley was fitted with high-powered digital hearing aids, and she started A-V therapy, which teaches children to listen and talk.

We also met with a geneticist at the University of Alabama at Birmingham, who told us after testing that Riley’s hearing loss was caused by the Connexin 26 gene. Both my husband and I carry mutations of the recessive gene. Finding out the cause was a relief, and knowing it wasn’t our fault freed us from a lot of our guilt.

After seeing that the hearing aids were not powerful enough, we began the process of getting a cochlear implant. On Sept. 16, 2003, Dr. Audie Woolley at Children’s Hospital in Birmingham did the surgery. On Oct. 9, 2003, our little girl heard our voices for the first time.

I wish you could see the video: She turned bright red, looked around, found us and started clapping and laughing. It was the most amazing thing I’ve ever witnessed.

Five years later, Riley has two cochlear implants and is about to finish kindergarten. She understands almost everything, and her language skills are catching up with normal-hearing peers. She plays soccer and softball, loves playing with other kids and loves to read.

Our daughter is a normal 6-year-old – she just has some colorful ear accessories.

Tiffani Hill-Patterson is a Times copy editor. Reach her at tiffani.patterson@ htimes.com.

Today is the first anniversary of Riley going bilateral. We sent Dr. Woolley a photo and note thanking him for helping her hear. He sent a nice one back. I also sent a card to Riley at school to mark the day.

I can’t believe it’s already been a year. The left CI has made such a difference in her speech recognition and expressive language skills. Yes, we still have work to do, but she catches on so much faster now. Why, it’s like having two ears! (almost)

And even though you’ve probably seen these photos before, I’m posting them again. 🙂

Leaving for the hotel the day before surgeryFamily Portrait while waiting to go to ORJust after surgery: I want a drink Family Portrait after surgeryOur sleepy girlComforted by her Disney Princesses“I’m going home, back to the place where I belong …”At last, home in the big bedWe have a photo where I’m holding a days old Riley like this; she wanted to re-enact it, so we did.Artwork while in recoveryMy folks brought her the Barbie Big Wheel that was supposed to be a Christmas present, but because there was trouble putting it together it was delayed until now. 🙂Taking a break from cruising on her Big Wheel in her Dorothy the Dinosaur hat, 5 days after surgery.

The first two photos were taken after Riley’s first cochlear implant surgery (right ear) on September 16, 2003. The first picture shows the incision: a large cut shaped like a question mark. The red ribbon covers a bit of the cut. The second picture shows the first earpiece and coil, which were connected to the Sprint in the third photo.

The fourth photo is from her surgery (left ear) on April 16, 2007. The cut is much smaller: an “S” shape. Dr. Woolley left more hair on the top layer this time, too.

I need to snap a photo of Riley’s left ear with her Freedom and add it later.